Thoracic Outlet Syndrome??

I was just curious if anyone on these boards has ever been diagnosed with thoracic outlet syndrome?? If so, when was the "ah-ha" moment, test, etc. that led the doctor to diagnose you with this?

I've posted before about the pain from the back of my head, down my neck (with terrible neck spasms that get worse with cold), shoulder pain, arm pain and numbness in my pinky and ring finger. I went and saw an orthopedic doctor and then a neurologist. They were thinking it was ulnar nerve entrapment..but the EMG/Nerve conduction testing came back normal. My nerve transmittion through my elbow was slightly slow, but otherwise normal. I was so hoping we had finally found the problem...but again, nothing. I am following up with the orthopedic doctor in a couple of weeks to discuss any other options.

What is interesting is the orthopedic doctor did some in office tests and told me it was not TOS. Then I saw a naturopath who told me it was TOS. So now I'm totally confused. I've read that plain films of the chest and c-spine might possibly be able to diagnose TOS?? Anyone heard of or had other tests that helped to diagnose this problem? I just don't want anything overlooked. I don't want to get sent to a pain center prior to finding the real diagnosis. It sure would be nice to have a name to go with all these symptoms.

Also, the naturopath has offered to do prolotherapy injections. I've done a lot of research on it since he suggested it. He will use ultrasound guidance to inject a combination of sucrose, B vitamins and some sort of "caine" for numbness.

Has anyone had these injections and did they help? He told me that once you damage a tendon it never completely heals and the injections help the healing process.

If anyone has information regarding TOS or prolotherapy that they'd like to share, I'd love to hear it.

Hi, I was diagnosed with TOS after I had rotator cuff surgery. My surgeon dismissed me and I was still in great pain. The Dr did not want to help. I had gone to PT for 5 months after surgery. I asked my PT about the problem/pain. The Physical Therapist correctly diagnosed my problem. I asked my PC for more therapy. After 3 weeks of the correct exercises I was completly pain free. I suggest your regular Dr to prescribe some PT. Good luck. I know it is very painfull

Thanks for the info. I was actually looking at PT exercises typically prescribed for people with TOS on the internet. But you know how you are always supposed to "talk with your doctor" first.

Yeah, this is the worst pain that I've ever had. I think because there just seems to be no end in sight and I get so depressed and anxious. I feel really isolated and lonely and it's really, really hard.

Also, I have one physician telling me it's not TOS (the orthopedic doctor) and one doctor telling me it is TOS (the naturopath). I feel the naturopath did a much more thorough exam though. He did some of the same testing that involved moving my arm behind me to see if I lose my pulse and according to him the test was positive. The ortho guy spent only a couple of minutes...so....I'm not sure who to believe. Which is why I have a follow up appt scheduled with the ortho guy. I'm going to ask him if there are any tests, rule outs, etc. that can be done.

I just want a diagnosis!! How hard can this be?!! I am very happy to hear about your PT working so well. This gives me some hope. I appreciate it so very much!!

It looks like a Thoracic Surgeon is one of the main Dr.s that can offer a diagnosis of this, or an Orthopedic Surgeon....and as Khana mentioned above...that doesn't mean surgery....it just means getting to someone who knows this syndrome and can rule it in or out...No offense to the Naturopath...but I don't think they have the same training as the one's I mention and I would certainly recommend going to someone more knowledgeable...

They can do a visual of your arms, hands, and veins...as well as do tests like EMG,CT, Nerve Conduction study...I see you have had some of them done before, so depending on when they were performed...you can bring results to the Dr. .and then once you have a diagnosis, can go from there with treatments like PT...As all good Dr.s will do the least invasive measures first to see if that helps...

It is a kind of tricky diagnosis as it can mimic other types of issues like a cervical disc issue, etc...So that is why going to a specialist would be helpful to figure this out..

I just did some reading on the Prolotherapy injections and from what I read on 3 sites I sure would stay away from it for now. There are some 'studies' out there that are flawed at best. No research to date has proven that these injections offer any of what they are claiming. More research and trials need to be run and they need to be legitimate. So far that has not been the case.

I do hope you find some help and relief!ChutzModerator on the Fibromyalgia and Chronic Pain forums~*~*~*~*~*~*~Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.~~~~~Use the talents you possess, for the woods would be very silent if no birds sang except the best.

I was just diagnosed with TOS. We are planning surgery. My Dr. is one of the leading surgeons for TOS and has done surgery on 2 women I personally know. He told me there are some factors that make you more likely to develope TOS. Like body structure. Stocky, well endowed women tend to roll their sholders which creates more stress on the outlet. Not to say men don't get TOS but women are more likely. Also repetious work. I have apparently had it since I was a teenager and never knew it. He told me I could try PT but the syptoms will just come back because the problem is still there. The test he did after my nerve conduction was neg checked the pulse in my fingers as I moved my arms different ways. When I put my arms above my head my fingers loose their pulse. If you have TOS with swelling you are more likely to develope blood clots from it. Because of this I am not going to put off the surgery. Not only am I tired of the pain, headaches, swelling and numbness, I also do not want to chance a clot. All of these other suggestions may decrease the symptoms but the problem is still there.

Welcome to the boards hnt4evr....You have stumbled across a thread that is from 2011...so it would be a great idea to cut/paste your post and start a New thread so that we can all welcome you and find out more about you.

The button to do this is on the upper left hand corner that reads Post New Topic.

Hello Hnt and welcome to the chronic pain forum. As Snowbunny mentioned you have posted on a very old thread and not many will see your post. If you don't mind please start a new intro post about yourself and be sure to give it a heading like maybe questions concerning TOS and prolotherapy. That way the members will see your post and be ale to pop on and tell you hello and welcome aboard.

We do have a member that has had TOS surgery recently, within the past 6 months. I am going blank on her name but hopefully she will see your post and pop on here.

Word of caution about Prolotherapy, there is a lot of controversy about it and most insurance companys will not pay for it, its pretty expensive. Do your homework on that before making any decisions.

I've had one session of prolotherapy and ended up almost in the ERdue to it, I would not in any way recommend it, find another doctorthat is more informed on tos and it's tratments, well wishes toyouand keep us posted as we do care...********************************************** * So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...********>^..^^..^